A Dad’s Perspective: Vaughan’s Story
“When I came into Vaughan’s life, he was about three years old.” shared Josh. “Technically, I’m his stepdad, but from the moment I met him, I was all in.” Before he was born, doctors believed he was a healthy, typical baby. It wasn’t until after his birth that things quickly became complicated. Vaughan struggled to regulate his body temperature, had difficulty feeding, and developed sepsis. He was admitted to the NICU, where doctors began noticing dysmorphic features and low muscle tone. They suspected something genetic but couldn’t find answers. He spent the first month of his life in the NICU and at Children’s Hospital in Washington, D.C., while doctors ran test after test—none of which provided a diagnosis. At one point, my wife was told Vaughan likely wouldn’t make it to his second birthday.
Just before his second birthday, Whole Exome Sequencing finally provided an answer: Vaughan was diagnosed with Bohring-Opitz Syndrome, an extremely rare genetic condition. At the time, he was only the 42nd confirmed case in the world. Doctors then warned he might not make it to age five. Today, there are around 300 confirmed cases worldwide, and increased awareness and earlier diagnosis have improved care and quality of life for children like Vaughan.
Vaughan turned 14 this March. He has undergone about a dozen major surgeries. He is non-verbal and non-ambulatory, and he sees eight different doctors or specialists throughout the year. He receives occupational, physical, vision, and speech therapies both at school and at home. Despite everything, he is one of the happiest people you will ever meet.
Our days start early—really early. During the school year, Vaughan’s bus arrives around 6:15 a.m. Mornings include diaper changes, getting him dressed, putting on his AFOs and shoes, packing his bags, and writing in his communication log so his school team is prepared. Vaughan loves being outside, and on warm mornings we wait for the bus together. That’s often when we see his first smile of the day—right when the bus pulls up. His driver and aide greet him with enthusiasm, and he’s ready to go.
Once he’s off, our attention shifts to his four-year-old twin sisters—getting them dressed and off to preschool before we head to work. After school, Vaughan has in-home therapy at least four days a week. Evenings include bath time and setting up his G-tube feed, which runs continuously from about 6 p.m. to 6 a.m. We try to carve out a little family time, but his sleep-wake cycle is unpredictable, so one of us stays up monitoring him until midnight. Then we refill his feeding pump, prep for the next day, and finally get some rest—before doing it all again. On top of that, we average one to two doctor appointments every week.
Vaughan’s sisters are starting to understand that their brother is different, but they don’t see that as a barrier. They’re incredible helpers—mixing formula, grabbing diapers, bringing toys, and helping him unwrap presents (their favorite job). They love their brother deeply and understand that wherever we go, Vaughan goes too. We try to model how to talk to him, include him, and care for him. It’s just part of our family.
Life for us is busy—constantly juggling careers, therapies, doctor visits, school coordination, and daily care. One of our biggest ongoing challenges is navigating the school system. Vaughan will transition to high school this fall, which brings a lot of anxiety. His care is extremely personnel dependent. He has attended seven different schools so far. Some teams have been amazing; others have struggled. No matter how detailed his IEP is, success ultimately comes down to the people caring for him. Starting over with a new team is always nerve-wracking, because when things don’t go well, Vaughan is the one who suffers.
Health challenges remain constant. Because he is non-ambulatory, his bones break more easily. He has digestive issues that require careful management, chronic ear infections, and ongoing medical needs. We’ve jokingly started calling Children’s Hospital of Richmond our “vacation home.” Over the past three years, we’ve spent nearly every PTO day there—and then some. We also rely heavily on Medicaid for Vaughan’s care, so potential cuts create a lot of uncertainty for our family’s future.
Through it all, Better2gether has been a blessing. They’ve supported us during long hospital stays, delivered meals when we needed them most, and provided Christmas gifts for our three children. Those gestures may seem small, but they make a meaningful difference in the middle of a very demanding life.
Sometimes families like ours get unintentionally left out. It can be hard for others to understand why we can’t attend events or why plans change at the last minute. Better2gether understands. They invite us, include us, and make it clear that it’s okay if we can’t come—or if we have to cancel. That understanding helps us feel less alone.
As for the Better2gether Dads Program, Josh shared “what I hope for is simple: a group of dads who understand this life. A place to encourage one another. A chance to help shoulder the burdens that many dads quietly carry. And an opportunity to share what I’ve learned along the way—offering insight, pointing others to resources, and supporting someone who may just be starting this journey.”
Because while this road can be overwhelming, it’s easier when you don’t walk it alone.